How Sjögren's Syndrome Has Affected Me
Sjögren’s syndrome has a whole host of symptoms like Central Nervous System damage, glandular damage, lung damage, renal impairment, joint damage skin damage, as well as dry eyes, dry mouth, and dry skin. There are also issues with chronic fatigue, chronic cough, dental problems, and Brain fog. I mean, like all autoimmune disorders, it is just full of fun stuff.
For me, it is impossible to tell what autoimmune disorder is causing what for me. So those that are shared with other diseases like lung damage, joint damage, chronic fatigue, dental problems, and brain fog will not really be talked too much about in this post.
Being a Marine and an instructor, I was taught how to project my voice. I have a very loud voice and no one has ever told me to speak up as they can’t hear me, lol. But Sjogren’s stole that from me, as now I often have a very hoarse voice and at times, I will completely lose it. It is really frustrating because I will just be talking carrying on a normal conversation and my voice just fades away and I can’t speak for a while. I haven’t discovered a solution for this yet, but hopefully, I will stumble on something to help.
I have been prescribed Pilocarpine which helps greatly with dry eyes, dry mouth, and some of the dry skin issues as well. The eyes will often feel like there is something in them and I can’t rub them out. The eyes and mouth are rough because I wear contacts and dry contacts suck and it was like I was often chewing on a mouth full of flour and that was really rough. No matter what I was drinking and how much of it I drank, I was as dry as a desert. I had to carry a drink with me at all times, even if I was running an errand like running to the corner store. I was often choking on some foods because I was so dry. I couldn’t eat breads and things that are dry like that, because they would get stuck in my throat. The corners of my mouth were often dry and had small sores in the corners of my lips.
My teeth are a total wreck because of the lack of saliva, and saliva is very key to keeping your teeth healthy and without it, your saliva actually helps keep bacteria from replicating.
The lung damage is a concerning one for me, as I have already developed some scarring on the lower left lobe, which could be the Sjogren or the Rheumatoid Arthritis as they both can cause that. My pulmonologist is tracking it, so I am good for now. My joints are all sorts of jacked but that could be the RA or the OA that I have in some of my joints, most likely it’s both. The fatigue is a huge one for me. I have always been that active person, the one that never stopped. When we would go hiking for Boy Scouts, they gave me the trail name of “Scolded Dog” because, I would put my head down and just keep moving forward, no matter how tired I was. They would all stop on a hill and I just keep moving forward, one foot after the other. Today, not so much, in fact, I have to often admit defeat and take a break which is so out of character for me. In fact, I was working outdoors with my family and I had to tell them that I had no more gas in the tank and I needed a break and some food. And if you know me, that is something that I have never done before. The break and food helped a little and it was enough to get the task completed.
But the fatigue is a huge one for my employer as well as for my spouse. My “honey-do” list is very long and getting longer by the minute and I just can’t get it done. In fact, for the first time in my life, I’m having to hire outside help to help me get stuff done. I just had someone install my dishwasher, which is something I would normally do. In fact, the one that is there and the one before it, I installed. And trust me, it is difficult to give up control like that, it is not something I’m happy with in the least.
Brain fog isn’t something that I talk much about on my blog, but for those who are not in the know, brain fog is when you just can’t think of things. Now I’m not talking about just forgetting something. I’m talking about things that you shouldn’t forget, like how to tie your shoes or sign your name, or the name of your spouse (who you have been married to for 35 years), where you live as you are driving down your street. Or things like forgetting everyone’s name, song lyrics, the name of where you work, you know those types of really embarrassing things, lol. I often call everyone, “Hey” when they call me out by name, why you ask? Because I totally forgot your name and I have only worked with you for the past 15-20 years, lol. And forget about me trying to concentrate on something. I was and still am, very much of a “squirrel”. I’m like Dug the Dog in the movie ‘Up’.
There are some negative side effects of Pilocarpine however, and those are tearing up at times, because, you have too much in your tear ducts, or you have too much saliva and you are constantly swallowing to keep it at bay, but those are both better than the alternatives.